The “total institution”, to use sociologist Erving Goffman’s phrase, thus emerges as a means of social control and regulation.13As an imposing and visible social monument, the total institution plays an important material as well as ideological role in the maintenance of the prevailing hegemony. As a carceral space, its function is to remove “all those who either cannot or will not conform to the norms and discipline of capitalist society.”14As a mechanism of ideological coercion, it sends the message to all those who do conform that the institution awaits those who fail to do so in perpetuity.
Part of the imperative guiding the social exclusion and institutionalization of disabled people (both then and now) is the principle of political economy referred to as “less eligibility”.15The notion behind it is simply that the prevailing level of welfare assistance doled out to those relying on public support must remain below the level of the lowest wage rate prevailing in the labor market. In this way, the ‘deserving’ can be separated from the ‘undeserving’ poor, and all those able to engage in wage-labor can be coerced into its undertaking on pain of being rendered a pauper. As Marco D’Eramo has pithily put it, whereas “the wage relation [may be] considered a hellscape … true damnation consists in being banished from it.”16
Comprising a “surplus” or “superfluous” population of non-productive individuals, essentially ‘disposable’, or worse, impedimentary, from the standpoint of capitalist political economy, disabled people became targets of social eliminationist practices, involving incarceration, neglect, torture, and sterilization.17 Owing to the particular history of white supremacy, settler-colonialist expansionism, and racialized slavery-cum-capitalism in the U.S., this class of people disproportionately comprises Black people, immigrants, indigenous people, and the indigent generally, in addition to the disabled.
The Process of Deinstitutionalization
Between the end of the nineteenth and the middle of the twentieth century – as industrial capitalism in the U.S. matured into one of the more developed economies in the world, and the state developed into a more sophisticated instrument for managing the social affairs of capitalism – the system of carceral disablement became an increasingly ‘perfected’ public institution. Especially during the postwar period, when U.S. political economy was characterized by a relative Keynesian, state-managed social welfare ethos, the regulation of the disabled was the purview of a medical-welfare-carceral government complex.18
By the 1960s and 1970s, however, this complex was coming under increasing criticism and protest. Radicalized and mobilized by the general civil rights, antiwar, and socially-rebellious ferment of the era, activists began decrying the institutional model as an inhumane system of domination and cruelty, unbefitting the image of a supposed ‘leader of the free world’. Relatedly, in San Francisco, New York City, and elsewhere, the modern disability rights movement was in the process of being born, replete with sit-ins, civil disobedience, and marches for access, equality, and self-determination for disabled people.
Significantly, disabled people confined within institutions were also active in this awakening of social unrest. Self-advocacy groups like Speaking for Ourselves and People First were populated by disabled people formerly or presently living in institutions. Members of these groups faced intense repression, intimidation, and violence at the hands of institution administrators and staffers bent on keeping their wards “in line”.19Persecution notwithstanding, the agency and activism of such people would ultimately come to play a key role in reforming and closing many state institutions.
Eventually, owing to a confluence of (what would prove to be contradictory) factors, including effective social movement campaigns and state budget restructuring, the vast bulk of state institutions for the disabled were shuttered. This process, known as deinstitutionalization, was accompanied by the notional mandate for former residents to receive services in community-integrated settings. In practice, however, such expectations were largely undermined by simultaneous changes occurring at the level of the national and global political economy. As deinstitutionalization progressed through the late-1970s and 1980s, the epoch of social-welfare, or state Keynesianism, was being actively deconstructed by dominant sections of the U.S. ruling class. The new mantra was that less government was better for the economy, and there was a generalized turn towards privatization of social services, austerity in state budgets, and emphasis on individual consumer choice. Neoliberalism, as this new model would come to be called, insidiously dovetailed with the desire to close the formerly budget-heavy state institutions. Autonomous choice was translated as fending for oneself in the private marketplace; freedom from state control as being freed from guarantees of state-provided welfare. Thus, the regulation and ‘care’ of the elderly and disabled by the state was increasingly turned over to private capitalist agencies and enterprises. Today, 68% of U.S. nursing homes – comprising roughly 1.5 million elderly and disabled people, including 150,000 young disabled people – are run as private, for-profit ventures.20
Many scholars of post-institutionalization have focused on the ambivalent character of the net results. Anne Parsons, author of From Asylum to Prison: Deinstitutionalization and the Rise of Mass Incarceration after 1945, argues that a “plethora of civil rights and freedoms” were gained by deinstitutionalized disabled people, but the “legal changes ultimately did not provide the right to adequate medical and social services in their communities…. As people who had been released from state mental hospitals struggled to find housing and employment, more ended up in jail.”21As the debate over deinstitutionalization was originally taking place, the fear that inadequate ‘community’ alternatives would replace the state institutions was, to be fair, a concern harbored by some people, including most notably many families of the institutionalized.22While such concerns would at least partially prove founded, it is important to recognize that blame lies not with the activists or advocates who pushed for deinstitutionalization, but rather with the various ruling agencies and state bodies that negligently ‘dumped’ their former charges into communities bereft of adequate supports or infrastructures.
The shortcomings of the community-based approach have been a result of a lack of resources, democratic accountability, and changes in the broader socioeconomic marginalization of disabled people. Studies of post-institution community-based conditions of disabled people have found what while many – especially those with less severe impairments – did indeed attain a degree of precarious “independent living”, others resided in group homes where days were spent in segregated or “sheltered” environments at a remove from community interactions.23 Today, the vast majority of people with disabilities do not live in institutions (at least as they were formerly conceptualized). Yet the dominant experience remains that of exclusion, marginalization, and isolation.24
In this vein, some scholars of disability and incarceration refer to a process of “trans-institutionalization” following that of deinstitutionalization.25Broadly construed, various institutional forms do in fact continue to dominate the lives of masses of disabled people. The disability rights group, Self-Advocates Becoming Empowered, defines an institution as “any facility or program” that segregates people based on disability and denies them control over their lives; this includes “[m]any services that have emerged ‘post-deinstitutionalization’,” such as public and private nursing homes, group homes, foster care homes, day treatment programs, and sheltered workshops.26
Paul Castellani, author of From Snake Pits to Cash Cows: Politics and Public Institutions in New York, provides an apt description of this trans-institutional process:
The problem of institutions was not one of size, auspice, or unique patterns of daily life. At the beginning of the twenty-first century, the overwhelming majority of individuals living in so-called community services were in congregate residential and day programs that replicated the highly routinized patterns of daily life typical of the downsized state institutions. Individuals living inside and outside formally designated institutions still received elaborately prescribed and monitored clinical-therapeutic services rather than supports for daily living most needed and would likely prefer….
Institutions “as we knew them” may have closed, but other types of institutions persevered, adapted, and achieved widespread professional and political support as their residents, their roles, and their relationship to other organizations continued to change.27